I took Nora to the neurosurgeon yesterday and found out that her arachnoid cysts (she has 3 of them) have gotten smaller and her brain has grown into the spaces. There is no need to shunt them and they don't seem to be causing any problems at all. That being said, she will still have them but hopefully they will not hinder her develpment.
The doctor doesn't think they had anything to do with her seizures. He thinks whatever the underlying cause of her brain malformations caused the cysts, the seizures, and the developmental delays. We just don't know what that cause is. We are still waiting for the 2nd round of genetic testing results. There are many possibilities that Nora could fit into, but nothing that matches her symptoms 100% so it is hard to pinpoint anything.
Anyway, no more MRI's for a long time unless there is a problem. Yeah!!!!
Thanks for checking in!
Lori
This is Nora's story... Nora was diagnosed with Infantile Spasms April 24, 2007. Infantile spasms is a rare seizure disorder. Nora was put on an anti seizure medication April 26th called ACTH. Her seizures were gone after 1 week of treatment and haven't been back. Nora also has partial agenesis of the corpus callosum and arachnoid cysts in her brain. For more info, check out the history section below.
1 comment:
Hi Lori! Thanks for stoppying by Lily's Blog! It's fantastic to "meet" another local family!
Your Nora is so adorable! I'm also so happy to hear that ACTH has helped her IS and you haven't had to go this yucky Keto Path that we're on right now. Lily is finally adjusting, but it's been a tough week.
Where are you guys getting your early intervention from? We've strugged getting quality EI since moving out of Snohomish County...I'm also getting a little nervous about Lily's transition into the school district. We're in Shoreline, and I'd *MUCH* rather be in Northshore.
If you'd rather answer these questions offline, I'd be happy to share my email: katie @ twintasticmom . com (remove spaces, natch).
Katie
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